ArticleThe journal of prevention of Alzheimer's disease2023
Understanding Online Registry Facilitators and Barriers Experienced by Black Brain Health Registry Participants: The Community Engaged Digital Alzheimer's Research (CEDAR) Study.
Article in The journal of prevention of Alzheimer's disease, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
9 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Community engagement, recruitment, and retention of minoritized participants in Alzheimer's disease and related dementia research: A systematic review of disparities.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Pooled it
- Examining the Role of Community Engagement in Enhancing the Participation of Racial and Ethnic Minoritized Communities in Alzheimer's Disease Clinical Trials; A Rapid Review.The journal of prevention of Alzheimer's disease · 2024Pooled it
- Lessons learned: drivers of non-response in a large population-based cohort study of Black women.Cancer causes & control : CCC · 2026Article
- Barriers and facilitators to recruitment, engagement, and retention of underrepresented populations in dementia prevention research: a scoping review.The journal of prevention of Alzheimer's disease · 2026Article
- The ADNI Administrative Core: Ensuring ADNI's success and informing future AD clinical trials.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- Neuroinflammation and Neurodegenerative Diseases: How Much Do We Still Not Know?Brain sciences · 2023Review
- Brain health registry updates: An online longitudinal neuroscience platform.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2023Article
- Community-engaged efforts to increase retention of Black American online registry participants.Alzheimer's & dementia (New York, N. Y.)Article
- Recruitment of mid-life adults to a randomized clinical trial: The multicultural healthy diet study to reduce cognitive decline and Alzheimer's disease risk.Alzheimer's & dementia (New York, N. Y.)Article
Corrections and comments
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Authors and funding
24 authors.
Funding
Abstract
backgroundFailure of Alzheimer's disease and related diseases (ADRD) research studies to include and engage Black participants is a major issue, which limits the impact and generalizability of research findings. Little is known about participation of Black adults in online ADRD-related research registries.
objectivesAs part of the Community Engaged Digital Alzheimer's Research (CEDAR) Study, this study aims to increase our understanding of facilitators and barriers of Black adults to participating in ADRD-related online registries, as well as to understand their preferences for communication channels. DESIGN, SETTING, PARTICIPANTS, MEASUREMENTS: We invited all Black participants enrolled in the Brain Health Registry (BHR) to complete a cross-sectional online survey. The survey consisted of rating scales and open-text questions asking about their attitudes towards brain health research, reasons for joining and continuing to participate in BHR, difficulties with participating, and preferences for modes of contact and website usage.
resultsOf all invited Black BHR participants (N=3,636), 198 (5.5%) completed the survey. The mean age was 58.4 (SD=11.3), mean years of education were 16.3 (SD=2.4), and 85.5% identified as female. Reported facilitators for joining and continuing to participate in BHR were personal interest (e.g., learning more about own brain health) and altruism (e.g., helping research). Among additional registry features which could encourage return, receiving feedback or scores about BHR tasks was rated the highest. Of those who found BHR participation difficult (21%), the most frequent reason was time burden. The most preferred way of receiving study information was via email. Participants reported that the websites that they used the most were YouTube and Facebook. DISCUSSION: The results of our study can inform the development of culturally-responsive registry features and engagement efforts to improve inclusion and participation of Black adults in online ADRD research. Providing participants with feedback about their registry performance and reducing the number of registry tasks are among the recommended strategies.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.